Mental illness has stolen my daughter

[Cazzymaddy]

...and I don't think she will ever be well again. She has been getting sicker since February when she was 11 years old and now we have worked though all the frustrating times of waiting for appointments- she jumped the queue by being admitted to a paediatric ward last week after a crisis where we took her to A and E. She is now prescribed Prozac for her OCD and anxiety, but she refuses to take it and she has some therapy appointments next week. She is unable to be within the sight of our house (as she suffers from panic attacks), so for the past month has slept at relatives houses (with either me or DH). From tonight, she has to stay at a hotel with either DH as relatives either live too far away or have withdrawn their support from us. Today seems a very bleak day and I cannot see any hope for her as she so far has refused to engage with any assessment appointments (she goes but will sit there and not speak) Can anyone please give me any hope with their experiences of a child with mental illness?

I'm sorry. Didn't want to read and run. Hugs to you and your family.

Gosh. I'm sorry that I have no advice but how awful for all of you.

Do you know why she won't go to your house? Did something happen?

hi
sorry you and your family are going through this,
my son has mild symptoms but i suffer from ocd/anxiety badly,
have done since childhood .
why cant she be in your house?

Cazzy, I'm so sorry you are all in this situation. I have lived through it too, with my DD. She was a little older than yours, though - 13 - and 2 years later is much happier and healthier, having undergone hours and hours of CBT. She is still on a large dose of Fluoxetine and I do sometimes worry that this is masking the anxiety which caused the OCD, but I guess we'll only know when the dose is reduced over the next couple of years. Hopefully by then she will have the maturity and coping mechanisms necessary to help herself.

I remember in one of her early sessions, the psychologist asked her if she wanted to get better, and the answer was yes. However, later on, as they tried to deal with each of her compulsive behaviours, she was very reluctant to let them all go. She let most of them go, but hung on to one, which they "allowed" her, though she eventually lost that one too, quite naturally.

It sounds as though your DD doesn't want to get better, and I'm not qualified to know why. But perhaps it is something to do with it making her feel different or special? Do you have any idea why she is anxious? In our case, the anxiety was caused by DD having some minor SEN, but combined they caused her serious anxiety, which she tried to control with the OCD.

I wish I could help you. DD's problems almost broke our family and I ended up giving up work as I no longer able felt I could look after her and do my job properly. However, rest assured, that when you get the right help, you will very quickly see a difference, particularly if you can get her to take the Fluoexitine. Once the anxiety has reduced, the OCD can be dealt with.

I wish you all the luck in the World and hope that you see light at the end of the tunnel soon.

Thanks for all your kind words- we never made it to the hotel in the end- had another trip to a n e where we were seen by adult mental health services which were no help- discharged home again and we had to sleep in the car as she would not come in the house. Took yesterday off work to spend most of the day on the phone to CAMHS and social services pleading for a bed for her somewhere- social services refused as she needs help from mental health services.

Camhs saw her at school and then saw us (without her) at home- now prescribed risperadone as well- plan to go to relatives after school, upon which she was violent in the car (making it unsafe to drive), ran around our local streets, finally came in the house where she was so violent again. I called my friend in the end who came round for my protection - she calmed her a bit, she took her Prozac and spent two hours with my friend doing her 'jobs' (her OCD). Waiting til 9am to ring CAMHS again to plead for a bed again. I am on compassionate leave from work to try and sort this out but getting nowhere so far. She will not explain why she is so anxious about the house, although she did come in last night- it is linked to her OCD and her 'jobs' as she sees them somehow.

I'm sorry you're having such an awful time, Cazzy. But I promise you it will get better. You just need the right help and you obviously haven't found it yet. I've been thinking about you so much, as my DD's illness took such a huge toll on us all.

I am fortunate that my DD was never violent. I wonder if calling the police when she is having a violent episode would trigger some help from mental health services? I have no experience of that so I might well be talking nonsense.

DD's OCD started in her bedroom. We though we were helping by letting her swap bedrooms, which would give us all a break for the first night, but the second night she would start her obsessive behaviour all over again. She'd tried almost every room in the house at the peak of it. To my knowledge, her OCD wasn't related in particular to her bedroom though, that's just where it started.

I wish I could be of more help. It is terrifying seeing your child suffer like this. When we eventually found the right help (we had a few false starts too) the change in her was incredibly quick: within a week she was a different girl and we could see glimpses of our "old" daughter. Within 6 months, the OCD had vanished though that isn't to say that some of her anxiety doesn't raise its ugly head occasionally and there has been the odd OCD relapse, but she now tells us as soon as she thinks she can't control herself so we are able to step in and support her.

Look after yourself. That's very important because you need to be strong to support your daughter who is clearly suffering hugely. But take heart that you WILL get the right help and this is just one of life's difficult "phases" which WILL eventually pass, be that in 3 months a year or 2 years.

Cazzy, it's awful, but with the right help it CAN be sorted even if it doesn't feel that way.

DS had severe OCD at age 10 to 12 or so and was hugely helped in the end by CBT with a very good CAMHS therapist. Hang on in there.

I'm so sorry you are going through this. My son suffers OCD and anxiety, he is 10, nobody can understand how hard it is xx

I am an adult with OCD that wasn't diagnosed til I was in my thirties but I know it started when I was about 9 or 10. It's a really dreadful condition. You so much loathe yourself for not being able to resist the anxiety and rituals. Your poor daughter and poor you.

But it is really really treatable though it does take time. Fluoxetine and CBT can make such an enormous difference. I am unrecognisably better having had go treatment. I do relapse from time to time but I've never got as bad as I used to be, and I know my triggers and early warning signs now and can get help sooner.

Best wishes to you and your family...hang in there, it can and will get better with the right help.

Cazzy, I was very mental ill as a teen, and through Medication, CBT, acupuncture and lifestyle changes I was fine by my midtwenties, got a degree and a happy life.

Really hope your DD finds things that help her.

Things are a little better and she's taking her meds, 1st therapy appt on Friday after school as CAMHS are managing her as an outpatient at present (if she will attend)- she's still staying overnight with DH at his parents as she feels unable to come in the house but at least she is calm, eating, drinking and going to school although she still has OCD ( obviously ) while she is there.

I wonder if anyone has any advice (and I posted this here rather than in AIBU as people here seem to understand) on our Christmas dilemma- MIL had promised beds to her other son, his wife (who is a deliberately confrontational person and my MIL dislikes her intensely- her words not mine) and their 2 children for 3 nights from Xmas Eve- this was before my DD got so ill. This means that my DD will have to vacate her bedroom (her area of OCD at their house) and relocate at my mums house for the Xmas week (as I am working 3 shifts that week)- she is already sad when we have mentioned this. AIBU in feeling upset about this- of course I am grateful they have given my DD a bed there (she is no trouble while she is there) but it will really make DD upset (and we have just got over the violent meltdowns- last one was 1 wk and 1 day ago now) or have I lost all perspective on this (I sometimes feel I have also lost my mind over all this)

Cazzy, you wrote that she's not talking to professionals at the moment, there's still a way forward. With OCD it's often important to get the family (people who share the same living space) involved as usually successful interventions will involve the family changing some behaviours as well. Ask CAMHS for an assessment of what you can do differently as a family. This will put some strain on your dd for a bit, change is especially hard to bear for someone with OCD and if she can't control her own and other's behaviour she might fear the world is collapsing for a while but where she's at the moment is a nightmare so it's worth it.

No advice as I really don't know too much about your dd,s illness but just wanted to wish you and her all the best with her treatment. What a terrible worry for you.

Oh dear, of course you're not being unreasonable to be upset. It's right that you should put your daughter's needs before anything else at a time when she's so ill.

It must be hard for your MIL too though as she probably has conflicting loyalties. Especially if her son and his wife don't understand how ill your daughter is and how much she benefits from staying in the room.

Sounds like you're doing everything you can for your daughter. Lots of sympathy.

Thanks for all your support- after school today she decided not to attend her therapy appointment, so once again it was me in tears in front of the doctor, apologising, so that I could get her repeat prescription. I felt so hopeless- the doctor would not up her dose (she is on half dose) without seeing her. Doctor said it would have been pointless to try and drag her there, as she would not have engaged anyway in the session. Camhs have given us some family support this week which was good and we are going again next week with older daughter. All seems bleak again tonight and Christmas is really worrying me- I just wish they had upped her dose to the 20mg as at least she is willing to take that.

I am sorry that your dd would not go to her therapy, after all it's in her best interests to get help. Very difficult to stand by and watch your dd go through this. Poor you. I hope things will improve soon. I have no knowledge of this so am not any help at all , but I wish you all the best and that Christmas will be ok for you all

Just a little update- dd is calmer but still not at home overnight though going to try 2 nights at home on Xmas eve and Xmas day. We've been having family help from CAMHS nurses which has been good and have some strategies for help but my DD will still not attend any apppointments. However, CAMHS told us on Thursday that their doctors will not keep prescribing for her without seeing her, so her meds will run out mid- February. It may be the only thing keeping her calm, so we will be back to square one basically, I am struggling with this and tearful most days. Does anyone else have a child who would not engage with therapy?